What I Know vs. What You Think You Know

This is a familiar debate among my friends and family and I. There’s my side: I’m the one with the disease, so therefore I know what pain and illness feels like in my body; I know what it feels like to go through day to day life as a disabled person; I’m the one who experiences medical treatments, infusions, needles never-ending in my arm; the familiar looks of annoyance when I use my handicap placard in the grocery store parking lot.

Yes, I understand that as someone who is with me all the time, you may experience some of these things as well. As the driver of the car that we use, the placard can bring you dirty looks and pissy whispered comments. I understand that you probably read up on my illness and maybe even medical journals so that you can be informed. I get that you’ve read up on all the healthy diet options out there and have just realized that if I go on the paleo/vegan/raw/gluten free/magic moon rock diet I will be cured of my disease, thusly angering my doctors who would prefer I stay attached to the hip to Big Pharm. I understand this. You “know” these things. But the way you “know” things is not the way I “know” things. Your “know” is an opinion, while my “know” is a fact. And I’m sorry if that offends you, but that’s the truth.

I saw a new doctor this week, a Pulmonologist, and he had some opinions on my current state of health. We were looking at my most recent chest X-Rays, the ones that three of my regular doctors looked at and agreed that I had multiple hairline fractures in my ribcage. He hum’d and ha’d over the images and then pronounced that he didn’t believe I had any fractures, or Osteoporosis for that matter. Well, I wasn’t there for his bone density opinion. I was there to discuss the fluid in my lungs, and whether or not it should be removed. His decision was that it shouldn’t. End of story. But doctors love to weigh in on everything, including my chest X-Rays. Well, sir, thank you so much for doing your actual profession of looking at the fluid in my chest, but I don’t really want to sit here and listen to you weigh in on something that three of my regular doctors and an ER staff have already concluded. He pointed to the arrows on the screen that the X-Ray specialist had made to.point out the fractures. Next to the tips of the arrows I could see the thin lines that my Rheumatologist, PCP, and Therapist had all coined as hairline or stress fractures caused by early onset of Osteoporosis.

“I don’t think these are fractures,” he stated. Um, ok, kudos to you for having an opinion. But I’m going to go with what three other doctors have confirmed. And most importantly, I’m going to go with what I personally know.

I KNOW what a broken bone feels like in my body. It’s a very specific feeling. In fact the first morning that I had the pain, I deduced it was broken ribs before even seeing my doctor or getting an X-Ray. I was the one that called my PCP and told her I had a broken rib and needed it looked at. I’ve had broken bones before. In fact quite more often in recent days due to the osteoporosis. And this chest pain was so sharp and intense I knew exactly what it was the moment I felt it. Its MY body. Don’t you think I would know by now what goes on inside it?

 

Another ‘I know VS You think you know’ example is the what seems like never-ending debate on what diets out there actually cure incurable diseases. My mom has made it her job to be in the know of what every new publication, article, idea, fad, and suggestion is out there pertaining to my illness. She decided quite some time ago that Rheumatoid Arthritis can be cured by healthy eating. First it was a gluten free diet, which for awhile was all the rage with health food nuts and weight loss enthusiasts. Gluten, she told me, was the cause for my inflammation. Where mom is concerned, I have learned that sometimes it’s best to just give in to whatever diet/idea/conclusion she’s into at that moment because often part of the idea has merit. And in most cases (I stress most) it’s no harm no foul.

So I tried gluten-free for three months. I’ve also tried the juice cleanse, the tbs of apple cider vinegar a day, vegetarian, no dairy, and no sugar. Hmmm, as it turns out, I still have really aggressive Rheumatoid Disease. Maybe it’s that I can’t seem to track down any good magic moon rocks…

Look, I agree that there are doctors out there that push more meds as opposed to healthy lifestyle. Most definitely. Big Pharm is no joke. I’m sure doctors get incentives for pressing certain types of medications, or quantities, on to their patients. In fact this morning was one of the first times I heard my Rheumatologist verbally push for more exercise instead of just changing steroid dosing. But at the end of the day, these doctors are the ones keeping me out of bed. These medications help me function on any level.  Yes I agree that healthy diet and exercise will make anyone feel better.

My point is that while I know that healthy diet and exercise are essential to any body (especially those that are sick), that alone isn’t going to cure me. Maybe if we were back at the beginning of my disease, when the pain was less and I was still able to work, a strict diet and mobility may have been key in getting me well faster. However at the same time, there is no way to know if that would have slowed my symptoms and made me well. It hasn’t been proven scientifically, nor been printed in any medical journal as the cure of Rhematoid Disease. So while I agree that yes a healthy lifestyle can be key to living a healthy life, I know my own body, and so far it hasn’t miraculously cured itself through that practice.

Don’t you think I know what my body feels like? Do you think I don’t know what it’s doing, what it’s going through, what I can and can’t handle? I know my body. It’s mine. I know what it’s going to do, and what it’s capable of. I know because it’s me. Your “know” is your “opinion”.

Say it with me again. My body, my rules, my knowledge.

 

 

To help me raise money to keep this body healthy and housed, please visit my donation campaign at:

Christine Lilley’s Life Fund

 

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About sixthousandsteps

In March of 2013, I was diagnosed with chronic Rheumatoid Arthritis and was told my disease was very aggressive. Every day since then has been an ongoing struggle and life lesson on how to stay positive and keep fighting. This blog is a glimpse of how it all came to be, and who knows what the future holds.

Posted on July 31, 2015, in The Journey and tagged , , , , , . Bookmark the permalink. Leave a comment.

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